Schrödinger’s cancer

It’s not a tumor

It’s not. It was negative. So don’t worry.

But this was the second-worst Christmas of my life. This was the Christmas where I learned what fear feels like.

The first-worst was Christmas of 1996, when we found out my dad had cancer and was being medically evacuated from Sigonella naval base in Italy , where he and my mom had just moved so he could teach science at the junior high school on base, to Frankfurt.

I had returned from the Peace Corps the year before and was still looking for a job. Shockingly, employers were not jumping to hire someone who had just spent two years increasing profits in a foreign language in another culture. I guess they thought – I don’t know what they thought. I guess the words “Peace Corps” put them off?

I was back in Austin, living with friends (thanks again, Laura and Dave xoxox). They were out of town for Christmas and I was alone on Christmas Eve and my brother called me to tell me that a family friend – a nurse – in DC had called him. I think my mom was relaying information to Mrs S to relay to us.

We didn’t have a diagnosis yet. My mom and dad were in Germany and there was an ice storm and all the non-essential personnel were told to stay home so nobody was coming into the lab.

What that meant was my dad was sick enough that the navy had flown my dad from Sicily to Germany to try to figure out what was going on and still didn’t know.

We were in cancer limbo.

We didn’t even get an answer until after New Year’s, when my dad was sent to DC and then to Lackland in San Antonio.

That was the worst Christmas.

The second worst was this one.

I had my regular annual mammogram on Thursday December 19. I went in, had my boobs squeezed, left, and thought no more of it.

As one does.

As one does when one has been lucky and has never had to think of it again.

And then I learned what it feels like to feel fear.

Yes, I felt fear when we learned my dad had cancer but that was fear mixed with certainty mixed with dread. When I saw my dad that New Year’s Eve, with the extra water weight and his pale face and the pain, I knew he was going to die. When the surgeons explained there was no way they could operate – that it would like like trying to cut out a soggy paper towel, I knew the cancer was going to kill him. I felt fear but it was fear mixed with pain and sorrow and loss and despair.

When I got the phone call four days after my mammogram telling me I needed a follow up to check on a few things, I felt the fear of surprise.

This was fear mixed with the vast unknown.

This was fear with nothing to touch.

This was fear with vast emptiness with nowhere to look.

I didn’t know anyone who had had a follow-up mammogram.

This is not something I have heard talked about.

I had no idea if this was common or not.

And I didn’t want to google.

My sister is a nurse practitioner, but I didn’t want to ask her – not so close to Christmas.

I sent the test results to my friend Ilene, who is a pediatrician.

Technique: Full-field digital images of the breasts were obtained in the CC, MLO and XCCL projections. Computer-aided detection was utilized for this exam. Findings: Breast Density: Heterogeneously dense, which may obscure small masses The pattern and distribution of the glandular tissue are unchanged from the prior exams. Early vascular calcifications are present. An asymmetry with associated architectural distortion is questioned within the medial right breast middle depth on the XCCL view only. No significant mass, calcification, or other finding is seen in the left breast.

She shared them with a physician friend who treats adults and wrote back that yes, I did need to have this looked at.

When your doctor friend says something needs to be checked out, you listen.

The earliest appointment I could get was Friday, January 3.

This was Monday, December 23.

All I knew was I had never heard of anyone being called back for a follow-up mammogram.

And I didn’t feel like I could talk about it over Christmas.

Mr T and I celebrated Christmas with a huge cloud over us. Did I have cancer? Did I not have cancer?

It wasn’t until an open thread on Ask A Manager that I learned that there are so many callbacks. So many. Callbacks that have led to biopsies that are still negative.

But I still didn’t know if they were callbacks for asymmetric thingies. And I didn’t want to ask that specific question. Because what if that was The Bad Kind? What if that was the Really Bad Thing that is Usually Cancer?

I wasn’t eating.

I wasn’t sleeping.

All I could think of was Cancer.

Mr T, the engineer, was trying to logic me out of my fear, which is how engineers approach these things.

He had talked to a friend of his whose wife has had multiple callbacks and everything has been fine.

He pointed out that the odds of my having cancer were very low.

I told him that although my head might understand that, my stomach did not and my stomach was ruling at the moment.

Fear.

Fear.

Fear.

Thursday night, I couldn’t sleep.

Friday morning, I couldn’t eat.

I forced myself to eat some toast for lunch. I didn’t need to pass out in the waiting room. That would be too expensive.

(I might be terrified but I am still practical.)

I texted my friend L that I needed a follow-up mammogram and asked for her good wishes.

She wrote back that she had been told the same thing on December 23 via voicemail but wasn’t able to talk to anyone until December 30.

She’s one of my best friends and I hadn’t told her because I didn’t want to worry her.

She hadn’t told me because she didn’t want to worry me.

We could at least have been terrified together.

Then I messaged my sister that I had to have a follow-up mammogram and that I was scared.

She called me immediately and asked why I hadn’t told her.

“I didn’t want to ruin your Christmas,” I said.

“BUT I’M YOUR SISTER!” she yelled. “And I’m A NURSE! AND I KNOW THESE THINGS! AND I’VE HAD CALLBACKS! AND THEY HAVE BEEN FINE!”

She told me that a mammogram is a screening tool. And a follow-up mammogram and a follow-up ultrasound are screening tools. And even a biopsy is a screening tool. She told me many are screened but not everyone has cancer.

Mr T and I went to the hospital. He complained about the bad signage to the breast care center, which he is correct about, and about the prevalence of sick people, which – hello.

Mr T externalizes his stress.

I internalize mine.

I am not sure if that is a good combination but there we are.

I left Mr T in the waiting room and went into the inner waiting room and changed into my gown. The radiology tech called me into the room with the machine and introduced herself again. She was the same tech I saw in December.

She asked me to spell my name and give her my birthdate.

I couldn’t speak.

She asked again.

I still couldn’t speak.

She reached into a shelf above her computer and pulled down a box of kleenex and handed it to me.

I finally choked out the spelling of my name and my birthdate.

She squeezed and x-rayed me, then took me back into the waiting area.

“The radiologist has to read these. It will take at least 20 minutes. Depending on what he sees, you might need the ultrasound test as well.”

I tried to read a magazine – good Lord Prince Andrew you were defending Jeffrey Epstein what were you thinking? – but honestly it’s hard to concentrate when you are about to find out whether or not you might have cancer.

It was the last few minutes of not-knowing.

It’s better to be in limbo than to know you have cancer.

It’s better to not know than to know you do have cancer.

I would rather be in suspense, I think, than to know for sure I have cancer.

Because in that state of not-knowing, there is a sliver of hope that there is not cancer.

The not-knowing includes both states: Yes cancer and No cancer. They exist simultaneously. The hope and the fear. And they take turns. There are slivers of calm in the days of waiting for the appointment – slivers of OF COURSE I DON’T HAVE CANCER WHAT ARE THE ODDS? – slivers of being able to breathe and eat and sleep for a bit – but there is also the fear. The fear of yes cancer. The fear of pain and chemo and shots and losing my hair and maybe death.

Not knowing is better than knowing if knowing means cancer.

It took only a few minutes before the tech came back for me.

She took me back into the room and the radiologist came in.

“You’re fine,” he said. “You’re fine.”

“I don’t have cancer?” I asked.

“No,” he said. He then explained all the technical stuff but my head was spinning and all I could hear was roaring in my ears and I was trying not to cry and trying not to fall to the ground in relief.

The tech smiled. “See you next year.”

 

 

 

 

 

 

 

 

 

12 thoughts on “Schrödinger’s cancer

  1. I can only imagine the terror – that’s a long time to wait to find out something so difficult. But standing ovation for a happy outcome, and Happy New Decade to you and yours!

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  2. You are going to be bombarded with comments from women who have been there, done that, and did not have cancer. I was there the first time at 36 – in the days when “normal” women didn’t have their baseline mamo until 45 or 50 (so long ago that i have forgotten which!). One year I got SEVEN follow-up mamos at various levels of magnification, before the surgeon – yes, the actual surgeon – apologized for bringing me in for a biopsy. He said he should have looked at the original one before i came in, because “any idiot could see it was fine”. (Need i say, i loved him unti the day he retired?) The most recent time was about five years ago. Even with my mother and three aunts having had breast cancer, so far i am fine.

    And, you are and you will be, too. Glad you wrote about your experience, tho. It’s therapy for you and for the rest of us. Happy New Year, Cancerless Goldie!

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    1. Holy smoke seven? You must have been terrified. And yes, I have been amazed at how many women (and men) have told me about their experiences with this. It’s awful. I am so happy it turned out as it did. Thanks, Webb.

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  3. Ugh, I’m glad you’re clear & sorry you had a rough wait to hear it. My technique is to only schedule mammograms & sonograms for the same appointments. Mammo always raises questions & they want more imaging. Radiologist has always said I’m fine after seeing both images (& previous). It’s easier for me this way than scheduling & waiting for a follow up appt.
    And I hope you & your friend each feel better about sharing your worries in the future.
    Best to you.
    Another AaM reader.

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  4. I’m so glad your outcome was ok and REALLLLLLLY happy you spoke up & discovered how many others have experienced this! My first mammo was 35 (I had an odd gyn who liked a very early baseline) so of course there were issues reading the results, had to get another tech and then wait for the radiologist on call. I’m happy that was an option and I didn’t have to go back!

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    1. I swear it’s the making you wait part that’s so awful. A friend lives in Madrid and they do it like you had it – they resolve it right then – no waiting. And the not knowing that so many of us have had this. I had no idea. I’m not happy so many of us have gone through this – surely we can come up with a better process – but I am glad that most of the tests turn out to be negative. But all that unnecessary fear. Honestly.

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  5. I’m so sorry you had to wait so long for an answer. After your Dad’s illness, the timing could not have been worse.
    I had a callback once – both my mom and sister had breast cancer (and both are still here!) so I zoomed into places I hope I never have to go to again. Wishing you continued good health for many years to come!

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